Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Oct 2000.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
71 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
9 people listed on the 990; $134K paid to officers and key staff.
Jack Johnson’s $85K as Founder is at the 69th percentile of top reported officer pay among 901 $100K–1M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 3 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Jack Johnson | $85,280 | $83,200 | $80,600 | $72,400 | $60,970 |
| Lisa Bacon | $47,756 | — | — | — | — |
| Debra Johnson | $1,418 | — | — | — | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2Yes
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Supports individuals with Fabry disease through information, advocacy, education, and compassionate care.
Questions for Fabry Support & Information Group
Your first name shows with your question. Fabry Support & Information Group answers here, for everyone.
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PATIENT MEETINGS-FSIG brings educational and support meetings directly to Fabry patients and families, many of whom face challenges traveling long distances. These meetings provide up-to-date information from medical and industry professionals and offer opportunities for peer support. In 2025, FSIG hosted meetings in multiple U.S.
EXPERT FABRY CONFERENCE FEFC-FSIG organizes the annual Expert Fabry Conference, offering patients, families, and professionals the opportunity to learn about the latest research and treatment options. In 2025, approximately 113 attendees participated in the conference, which included presentations from leading medical experts.
Website Education
FSIG maintains an online platform that connects Fabry patients and caregivers, providing reliable educational resources and opportunities for peer support. In 2025, the website received 20,815 visits and continued to serve as a trusted source of Fabry-related information.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2025 990, line by line.
Download 990
| Line | Start FY25 | End FY25 |
|---|---|---|
| Cash and savingsLn 1–2 | $736K | $753K |
| Land, buildings, equipmentLn 10c | $17K | $12K |
| Total assetsLn 16 | $759K | $795K |
| LiabilitiesLn 26 | $26K | $46K |
| Net assetsLn 32 | $732K | $749K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $0 | |||
| Grants to domestic individualsLn 2 | $31K | $31K | ||
| Grants and assistance to foreign recipientsLn 3 | $0 | |||
| Benefits paid to or for membersLn 4 | $0 | |||
| Pay of current officers, directors and key staffLn 5 | $134K | $105K | $27K | $3K |
| Pay of disqualified personsLn 6 | $0 | |||
| Other salaries and wagesLn 7 | $116K | $90K | $23K | $2K |
| Pension plan contributionsLn 8 | $0 | |||
| Other employee benefitsLn 9 | $0 | |||
| Payroll taxesLn 10 | $33K | $25K | $7K | $629 |
| Management feesLn 11a | $48K | $48K | ||
| Legal feesLn 11b | $0 | |||
| Accounting feesLn 11c | $0 | |||
| Lobbying feesLn 11d | $0 | |||
| Investment management feesLn 11f | $0 | |||
| Other fees for servicesLn 11g | $699 | $699 | ||
| Advertising and promotionLn 12 | $0 | |||
| Office expensesLn 13 | $0 | |||
| Information technologyLn 14 | $0 | |||
| RoyaltiesLn 15 | $0 | |||
| OccupancyLn 16 | $5K | $3K | $1K | $283 |
| TravelLn 17 | $50K | $35K | $10K | $5K |
| Travel and entertainment for public officialsLn 18 | $0 | |||
| Conferences, conventions and meetingsLn 19 | $87K | $87K | ||
| InterestLn 20 | $0 | |||
| Payments to affiliatesLn 21 | $0 | |||
| Depreciation, depletion and amortizationLn 22 | $5K | $2K | $1K | $1K |
| InsuranceLn 23 | $0 | |||
| Other expenses (24a–d)Ln 24 | $34K | $14K | $15K | $5K |
| All other expensesLn 24e | $11K | $2K | $7K | $2K |
| Total functional expensesLn 25 | $554K | $394K | $140K | $21K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest Viewing | $571K | $554K | $17K | $749K | 990 PDF |
| FY2024 | $645K | $608K | $37K | $732K | 990 PDF |
| FY2023 | $444K | $541K | −$98K | $695K | 990 PDF |
| FY2022 | $680K | $505K | $176K | $793K | 990 PDF |
| FY2021 | $442K | $313K | $129K | $521K | 990 PDF |
| FY2020 | $363K | $273K | $89K | $390K | 990 PDF |
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Schedules filed Part IV
See the full FY2025 990 (6 parts)
Part I · Summary $570,712 revenue, 12 lines filed
Part VI · Governance 7 of 10 board members independent, 1 to look at
Part VIII · Statement of revenue $570,712 across 7 lines filed
Part IX · Statement of functional expenses $554,160 across 30 lines filed
Part X · Balance sheet $795,241 assets, 10 lines filed
Part XI · Reconciliation of net assets $748,837 net assets at year end
Form 990 e-file (XML) FY2025 from the IRS · Classification, formation year and address from the IRS Business Master File
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